Law, ethics sometimes create misperceptions
Ethics needs to be balanced with the law
Although most patient care scenarios can be worked out through careful communication with all those involved, there are certain situations where even greater diplomacy may be required on the part of ethics consultants.
One situation in particular where this is often the case relates to advance directives and the selected surrogate decision-maker, who makes decisions for the patient when he or she is incapable of making decisions for himself or herself, according to Nancy M. P. King, JD, professor, department of social sciences and health policy, Wake Forest University School of Medicine, and co-director, WFU Center for Bioethics, Health and Society in Winston-Salem, NC.
Kaiser's Paula Goodman-Crews, MSW, LCSW, bioethics director in San Diego for 10 years with Kaiser Permanente and now also regional bioethics director of the Southern California Region, provided two examples "where the law might not follow ethics and vice versa."
also suggests that advance directives and surrogate decision-makers represent an area often ripe with disagreement within families.
"Take, for example, the situation where someone has an advance directive and/or a surrogate decision maker, and together, either the advance directive or the surrogate decision maker or both say, 'Action X is the best action for this patient under these circumstances.' And the family comes in and says, 'Don't you dare do that. We think Y is the best thing,'" King says, noting that this type of situation occurs regularly.
"Cousin Fran may be upset that she wasn't chosen; it may be that the patient has a very different view of the decision-making process than the family, who doesn't feel like they're ready to let the patient go," King explains.
And this is where the scenario becomes complex.
For example, someone on the team caring for the patient may think that the best way not to get sued is to follow the family members' wishes.
Somebody on the team might maintain that if what the family wants is for the patient to be kept alive as long as possible, that's what should be done, since there's "very little case law saying that somebody who fails to honor an advance directive and keeps the patient alive longer has actually done cognizable harm to a patient that can be effectuated through a lawsuit," says King.
In a hypothetical situation, King says that a team member who wants to avoid being sued, may wish to choose care that is counter to what is in the advance directive, noting that "nobody's ever going to bring that lawsuit, and they may not sue, because the patient was kept alive and because it's very difficult to bring lawsuits like that."
That would be the wrong decision to make, according to King.
"This is . . . a situation where somebody is really expecting that it is really possible to keep everything quiet by doing something that's morally wrong," King says. It's these kinds of situations that "may be what cause people to believe there is an incompatibility between law and ethics, when there really is not."
"It's clear that in that kind of a situation, the advance directive carries substantial weight and should be honored, but, in fact, the right way to proceed with a situation like that isn't to say, 'Hey, law is on our side, as well as ethics, but to sit down with the family and really, again, take that initial time. One of the reasons why it's easy to . . . try to take mental shortcuts and say there's an incompatibility here is that the best way to address perceived incompatibilities like that is very time-consuming and involves some very difficult conversations," King explains, noting that "there's a lot of hard work that needs to be done."
Pediatric informed consent
All those interviewed by MEA suggested that it is very important for ethics consultants to be aware of the laws, particularly those within their state, which may constrain their recommendations to patients or their families.
"Clinicians need to know what are the legal constraints that they really need to talk to legal counsel about to understand...and then they need to understand what are the ethical concerns, and that's where the ethics consultants can frequently be very helpful, according to Alexander A. Kon, MD, CM, FAAP, FCCM, who is, among other appointments, director, clinical bioethics consultation service and chair, bioethics consultation committee at UC Davis Medical Center, as well as director of bioethics, Clinical and Translational Science Center at the University of California, Davis.
"There are certainly times when recommendations from the two might be somewhat different," Kon says. "In general, the law and ethics go hand-in-hand, but that's not always the case."
One example where the two may not go hand-in-hand, from his perspective, is the age of majority in informed consent. As an associate professor of pediatrics and bioethics at the University of California, Davis School of Medicine, Kon has had experience with this situation.
"From an ethical perspective, what we look at in capacity for informed consent is people's cognitive ability to understand the ramifications of the decisions that they're making and what's being proposed and some of these other issues," Kon explains. "In fact, there are some people who are not yet at the age of majority who have that capacity, and then there are some people who are over the age of majority [who] do not have quite that capacity."
For example, he provides the scenario of a teenager who is capable of making his or her own decision, but who was not yet at the age of majority.
"From an ethical perspective, it may be very appropriate to allow that person to make decisions for himself or herself," he says. "From a legal perspective, that wouldn't be legal. How one works in those types of situations can sometimes be a little difficult, because we have to look at both sides of the issue, and then clinicians need to make some decisions based on what makes the most sense to them."
One of those examples is physician-assisted dying. Physician-assisted dying is now legal in three states Oregon, Washington, and Montana.
"Now, from an ethical standpoint, that may not really comport with one's own values or viewpoints or it might," Goodman-Crews notes.
"So, let's say I live in California, and I want a physician to give me a lethal dose; while we may think we should be able to do that and that's the right thing to do, in California, it happens to be illegal," she explains.
While she notes that the fact that it is illegal ends the legal portion of the discussion, "then what you see and this gets into really kind of frightening territory, where there are physicians, especially, I would say, hospice physicians, who almost on a daily or weekly basis are probably approached by patients or family members asking, 'Please, can you do something?'"
That is a scenario that does occur, and while the physician has to respond to the patient's request by saying that this action on his part would be illegal, that physician may not be aware that one practice that some patients follow is to stockpile pain medications to bring about their own death.
While physicians may, in fact, prescribe pain medication with the intention of reducing suffering, they cannot prescribe a lethal dose.
So, should that be considered patient autonomy?
"I guess it could be considered an act of autonomy, but what happens when the law prohibits [this]? One might say the final act of autonomy is the taking of one's life. But the law prohibits you from doing that [with a physician's assistance]," she says.
If a hospice patient were to choose to overdose, the legal framework would dictate that the police be sent to the residence or site of death, where it would then be determined if this is a coroner's case. If it is determined to be a case for the coroner's office, the police may be suspicious that there was foul play involved in the overdose of the patient.
"Now, most of these patients are in a setting where they are dying or have grave disability, [but] they are really cases that are looked at case-by-case by the coroner's office," Goodman-Crews explains.
While she says she isn't sure how common this is, it is common enough such that Kaiser has had ethics cases centered around failed suicide attempts in such circumstances, i.e., where a patient tried unsuccessfully to end his or her own life.
If that patient already has a Do Not Resuscitate order (DNR), then that means don't put the patient on life support.
"But let's say they're coming in with an assisted suicide attempt; then it gets really confusing . . . so you have competing ethical obligations," Goodman-Crews says. "So, what are those obligations? Well, if a patient comes in with an attempted suicide, are we obligated to continue to respect their autonomy, in which case we might be aiding or helping the patient complete the attempt of suicide?"
In other words, if a patient has a DNR order, "is it ethically defensible to override their autonomy by treatment [or] is it ethically required?" she says.